The first session in PPMD’s Becker muscular dystrophy webinar series brought together clinical experts and a community member to talk about genetics, neuromuscular care, and what it means to live with Becker. Below is an overview of key points and the recording in case you missed it!
Speakers:
- Lauren Bogue MS, CGC, Curator for The PPMD Duchenne Registry
- Dr. John Brandsema Attending Physician, Neuromuscular/General Neurology & Electromyography, Children’s Hospital of Philadelphia
- Nevin Steiner living with Becker muscular dystrophy
Genetics Overview – with Lauren Bogue, MS CGC
- Lauren walked through what happens at the genetic level in Becker, explaining how changes in the DMD gene affect dystrophin production.
- She reminded us that Becker and Duchenne exist on a spectrum and there isn’t always a clear line between the two.
- Lauren explained how Becker is inherited through the X chromosome, and what that means for families.
- She also described what genetic counseling looks like and how different healthcare professionals can play a role in helping families understand and adapt to genetic information.
- The emotional side of learning about a genetic diagnosis is just as important as the science. Every person and family has a unique journey.
Neuromuscular Care – with Dr. John Brandsema
- Dr. Brandsema talked about how symptoms of Becker can appear at many different ages, from early childhood through adulthood, and progress at different rates.
- Most people start noticing muscle weakness between ages 8 and 13, and while some may experience walking challenges in their teens, others have a much slower progression.
- He shared that the heart deserves special attention in Becker care, since cardiomyopathy is a major concern and should be closely monitored.
- Dr. Brandsema emphasized the importance of the multidisciplinary team working together to care for the person living with Becker.
- He highlighted the role of the neuromuscular specialist– guiding diagnosis and care, tracking progression, coordinating therapies and equipment, and leading the care team.
- Finally, he encouraged families to include mental health and psychosocial support as a regular part of care.
Lived Experience – with Nevin Steiner
- Nevin shared his story of living a full life with Becker—raising a family, staying active, and building a strong care team he trusts.
- He talked about how he’s learned to advocate for himself during appointments and find adaptive equipment that helps him stay independent.
- Over time, he’s embraced advocacy and found strength in community—connecting with others online, joining support groups, and helping raise awareness for the entire neuromuscular community.
- He encouraged others not to “hide behind the disease”, but be proud of who you are and use your voice.
For additional information and resources on Becker, please visit PPMD’s website.
Please remember PPMD is always here for you! Schedule time to meet with a member of PPMD’s team to ask questions or talk through genetics, care, school, resources and more through PPMD For You.
Please don’t forget to register for our second webinar of the Becker Muscular Dystrophy Series Part 2: Cardiopulmonary Care on November 13, 2025 at 1p EST. Register here.
Watch the recorded webinar
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